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Karen

Administrators
  • Content count

    6,723
  • Joined

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Karen last won the day on June 17

Karen had the most liked content!

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About Karen

  • Rank
    Administrator
  • Birthday 26/08/1962

Profile Information

  • Gender
    Female

Converted

  • Biography
    Where do I start? I had a Subarachnoid Haemorrhage in 2005 and life became very different!
  • Location
    Wimborne, Dorset UK
  • Interests
    James Patterson, Lynda La Plante, Cranford, Marian Keyes, Cathy Kelly The Great Outdoors, Planes, Tr
  • Occupation
    Running this site
  • SAH/Stroke Date
    25/07/05 SAH - aneurysm coiled

Recent Profile Visitors

1,609 profile views
  1. Good luck Jeff and wishing you the very best. xx
  2. Karen

    Collagen rich food

    I've also looked at Collagen foods in the past and incorporating them into my diet... can't do any harm! x
  3. Karen

    Finally - 6 Years

    Well done Paula! It does take a few years to get your head around things and to adjust to life and heal! Sending hugs and love to you...xx
  4. Karen

    Night sweats

    Night sweats are horrible .... it's definetly worth running a bedside fan and keeping a summer duvet on. I'm on Sertraline and don't find the night sweats any different ..... I still have a fan on low in the bedroom and wear loose clothing. Make sure that your husband is keeping up with his fluids .... a glass of water does help before bed time.
  5. Karen

    infundibulum

    I also have one and was told that it was nothing to worry about.
  6. Karen

    Work/life balance

    Tina, have a chat with your husband and be honest to how you're feeling. Having two girls to look after, working and running a house and only 11 months on from your SAH is quite a handful and I can well imagine that you're feeling pretty done in! Recovery is something that only you can manage and there's no magic cure .... it's tough, but you have to deal with those questions such as .... Do I need to work? Can I get family or friends in to help take some of the load? It's a horrible position to be in and I remember it well .... it took me too long to find what was good for me, rather than what was good for everybody else. I'm not sure how much you do for your girls, but they are 8 and 10 ... perhaps they can help with a few chores or making their beds, bringing down washing or wiping up the pots. I know that it's difficult to ask, but it sounds that you need some help. Be honest with your family/friends as to how you're coping .....a SAH is huge, it's not yours to bare on your own and you will feel much better to have a lighter load. Take care and talk to your husband. xx
  7. Hi Zac, I think that you need to take a list of questions with you and hand them over. There's always a risk with any surgery, irrespective of it being brain surgery. I'm sure that the medics would weigh up the risks to you ...... that's their job. They wouldn't put you in a position where it would be worse to operate, rather than leaving a surgical procedure alone. Nobody can tell you the odds of brain damage ... that's something that you need to ask your medical team. I wish you well. x
  8. Ian, you're still in early days and weeks of recovery. It's only normal to feel panic ... I know that I did at your stage when I went to my first appointment! Mention the headaches and ringing in the ears .... both aren't uncommon from what I've learnt. I had both of those....but write down a list of questions and just hand that list over to whoever you see... don't ever worry that your questions are a bit naff .... looking back, I wish that I'd been brave enough to ask them, as I'm sure that it would have helped me and stopped my struggling. I'm quite some time on from my SAH ..... I'm still alive and kicking... good luck! xx
  9. Karen

    New aura

    Hi Laura, I would say that this is something that you need to get checked out with your GP and explain your symptoms. However, that's not to worry you ... Aura or migraine aura is something that I've experienced many years before my own SAH and I still get them. The first one was pretty scary and I experienced it when I was in my late twenties.... I also found that I was pretty light sensitive and glaring sun or the light from a light bulb, could set it off. If this, is the first one that you've experienced and I can't say that your description of the aura resembles mine, as I have what's called the classic aura with zig zag lines ... normally pre-migraine, but sometimes I just get the aura and not the banging head. Get yourself and blood pressure checked out with your GP. xx
  10. Hi Jean, You're doing well if you can read 20-30 pages at a time. The author of the book, Alison Wertheimer also had a SAH and she fully understands its fallout ... Sorry to hear that you can't find a local support group, but I'm glad that you've found some comfort with her book. x
  11. Behind the Gray has been approached by Oracle Fieldwork (details below) who are looking for volunteers from the UK who've suffered an Aneurysmal Subarachnoid Haemorhage. They are specifically looking to speak to patients aged between 18 - 70 who are 3 - 12 months into their recovery. However, if you fall slightly outside the upper range of 12 months post SAH (18 months max), you may still be considered. Interview to take place last 2 weeks of May 2018. Oracle Fieldwork are an independent market research agency working within the codes of conduct of the Market Research Society (MRS) and British Healthcare Business Intelligence Association (BHBIA) and complying with Data Protection legislation. The anonymity of anyone taking part in this study is guaranteed and the research is not intended to influence views or opinions in any way. If you're interested in taking part or have any questions please contact Paul directly via email or phone rather than asking questions on the forum, as the Admin Team at Behind the Gray aren't involved with the research and therefore we won't be able to answer any questions or concerns that you may have. Many thanks. ------------------------------------------------------------------------------------------------------------------------------------------------------------ My name is Paul Socha and I work at Oracle Fieldwork, a medical market research agency specialised in pharmaceutical and medical market research. Project Background We are working with our client who is interested in providing validation of the use of two questionnaires in aSAH patients. The objectives of the research activity are to: Assess how relevant the content of two patient outcome questionnaires is to aSAH patients and Understand what treatment outcomes are important to aSAH patients We hope that this research will allow to understand how aspects of these questionnaires could be more personally relevant to aSAH patients and for use in further aSAH treatment evaluation. We are specifically looking to speak to 25 patients based in the UK that have had an aSAH in the past 3 to 12 months and are between the ages of 18 and 70. We are asking you to take part in a 90 minute interview in the last two weeks of May. We expect that it won’t take the full 90 minutes but want to give you enough time to look through and comment on both of the questionnaires (which will be based on an iPad) as well as time to discuss the treatment outcomes that are important to you. If you live less than 2 hours of travel from London, the interviews can be held face-to-face, in a location that is convenient for you, for example in your home. If you live elsewhere in the UK, interviews will be conducted via video-call. If you think you will require assistance with operating an iPad during the interview, you are welcome to bring your partner/spouse/relative/friend for any assistance. You will receive an honorarium of £70 (remote interviews) or £80 (face to face interviews) for taking part. This will be in the form of a bank transfer or Amazon voucher – whichever you prefer. There will also be a donation made to your support group for taking part in this study. If you are interested in taking part or have any questions regarding the study then please do not hesitate to contact me at Oracle Fieldwork on 0161 284 8889 or paul@oraclefieldwork.com Kindest regards, Paul
  12. Hi Umut, How is your Mom Nug today? I truly hope that she regains consciousness soon. It sounds as though you and your family are doing all of the right things with playing messages of family voices that are familiar to her. Tough times for you all, but it sounds as though Nug has a lovely supportive family around her. x
  13. Pat if you private message me with a password that you want to use, I can reset it for you.
  14. Karen

    1 Year Anni-versary

    Well done Kay! Relax and best wishes on your road to recovery. xx
  15. Hi Swishy ... love your user name and a great word to describe how it feels! Yes, balance and eye issues were huge for me (I had a third nerve palsy to my eye which gives double vision) .... I still get the odd balance problem when I'm having a bad day or particularly tired and need to be a bit more dehyrdrated or just take it easy. One size doesn't fit all with SAH recovery and at 12 months post SAH and returning to work, I would perhaps say, that you're doing pretty well, even if a bit "Swishy!" I also had all of the vestibular issues and the head and eye exercises took me truly out of my comfort zone! From my own experience, I believe that it's with time and regaining personal confidence, that nothing bad is going to happen ... Your brain kind of makes allowances for being a little wonky over time and it does get better and better. However, speaking personally, balance issues raised my comfort zone and hence my anxiety, which does nothing for your confidence or balance issues. Eventually, I went back to the Doc and was given meds for anxiety, which helped. I struggled for too many years and SAH fallout is still a learning curve, but the meds have helped. A walking stick? ... I still have mine and it's a fold up one ... I don't know anyone that's happy to use one, but it's like a security blanket and you concentrate more on the fact as to where the stick is going, rather than the balance issues. Tinnitus? Yep, I have it .... Get some ear or head phones and put some music on ... I find that it helps with walking. xx
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